I’m new here and am slightly beside myself! I went for routine blood tests which showed slightly high res blood cells and slightly high hemocrit and slightly high iron. I was advised that these tests results were similar to 3 years ago. I got passed to a new dr who decided to write to a haematologist at the hospital and he said to have a jak2 CALR and BCR blood test. No one has explained to me what they are but after googling them it’s obvious it’s to determine whether I have a blood cancer. It’s been 3 weeks so far and I’ve heard nothing other than one test went missing so had to be repeated. I’ve had to cancel my holiday and I’m generally living in a complete anxious state. I’ve started to accept if it do have a cancer it’s not the end of the world however one thing that’s really worrying me is will I be able to continue to work and drive? I have a young family who obviously rely on me and I literally have no symptoms at all. I’ve looked at the dvla page but can’t find Polycythaemia Vera on the list does anyone know if you have to notify them and has anyone had any issues continuing to drive after a diagnosis? Many thanks in anticipation
Hi @Cookie and welcome to the forum.
It must be a really worrying time for you. I was diagnosed with a different blood cancer 5 years ago and before I got the actual diagnosis I went Google crazy as well. Sometimes this can cause extra anxiety so I’m glad you found the forum as the information on here is accurate.
The waiting is often the hardest part. Now you have done some research it is really important that you write down all the questions you have so that you are ready when you next speak/hear from your consultant or GP.
I don’t know the answer to your question about driving. Others may be able to share their experiences and the support line may be able to help.
Have you got a good support network around you?
I’m hoping you will be able to book another holiday once you find out more.
Please keep posting. We all understand how you are feeling at the moment and are always here to listen, support and advise where we can X
Firstly a very warm welcome to the forum. I’m sorry to hear that you are going through such a worrying time right now. It is completely understandable that you have so many unanswered questions. I am however, really pleased you have found us and i hope the support that others have already so brilliantly given has been somewhat helpful.
Like others have said often the waiting for the results the most difficult because we do tend to look into the what if’s and this can often just become too much. It is worthwhile noting that whilst ‘Dr Google’ certainly has its uses, it can also send us in to a rabbit warren of inaccurate information. We ourselves do hold some information of Polycythaemia vera (PV) which may be helpful to read through- Polycythaemia vera PV) | Blood Cancer UK.
As it mentions, there’s a very good chance that people who are diagnosed with it will have a normal lifespan and a good quality of life whilst being able to continue working & driving, if the condition is carefully monitored and treated as needed.
We do have a number of supporters within this forum who also have a similar diagnosis and I’m certain who would be able to offer reassurance to you also once perhaps you have your full results back.
Also please do know that our support service team are only a call or email away and should you wish to talk anything through at all, we would only be more than happy to off any support we can- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
Hi @Cookie A great big welcome to our forum and I expect that you are completely beside yourself with thoughts and feelings going in all directions.
You have also entered a weird world of medical terms and interminable awaiting others, which are the worst times.
As you have a young family you are naturally very concerned about being there for them in all senses of the word.
Do you have any support from family and friends?
I was diagnosed 18yrs ago with another blood cancer and my life is more enjoyable now than it ever has been.
I am perfectly fit to drive. I cannot remember if I have been asked about medical conditions for my car insurance, but I have always declared it if asked on all insurance policies.
Others have given you brilliant advice which I will not repeat.
Look after yourself and be kind to yourself and please let us know how you get on.
I was diagnosed with Polycythaemia vera (PV) in August 2020 aged 39. It certainly takes time getting used to the idea of having blood cancer and I can imagine more worrying for you by having a young family. To answer your question… I’m perfectly fine driving… regarding work, I’m on reduced hours to make it easier for me to attend appointments so it causes less disruption to all parties. But depending on the demands on the job you maybe absolutely fine to continue.
I’ll be more than happy to discuss anything regarding Polycythaemia vera (PV)… I’m no medical expert but can answer from a patient perspective anything you need to know. Just drop me a message
Thanks everyone your messages are very much appreciated! I have literally gone from 2 dr saying they weren’t worried and then this dr decided to write to the on call heamatologist who advised these tests. The dr has never gone through the tests with me so I’ve literally been left with Google! I am not under a haematologist atm So I am extremely confused and as time goes on I’m imagining the worst and then it spirals out of control. I have a husband but he is quite a bit older than me and is retiring soon so we will be reliant on my wages to let my children carry on with their activities etc. i know I’m ahead of myself and I need to wait and see ! It’s just nice to talk as I’m driving my husband mad lol!! Thanks once again x
Hi @Cookie it is so natural to be imagining the worst and then your thoughts and emotions just spiral out of control.
Now you have your forum family around you.
My husband has his head in the sand and cannot talk about my thoughts, emotions and blood cancer so this forum is a life saver and I feel that people really understand me on here. If I need to talk to someone I can call the Blood Cancer UK support line.
So please use us I have found no matter what our blood cancer is we often seem to share similar thoughts, emotions. questions and practicalities.
How old are your children and do they know what is going on?
Keep posting and take lots of care
Hi my girls actually I guess are not so young as I think they are!! They are 13 twins and yes they are well aware of the tests that I’ve had. My main thing is I need to work to get the money in so that they can carry on doing what they do and for that to happen I also need to be able to drive so as long as that can carry on I think I can cope! From what I know my bloods are only slightly high and they are the same as they were in 2019 so Im presuming it’s early stages as also I have no Symptoms. God knows when the results will come back it’s been 3 weeks now for 2 of them and 2 weeks for one of them as they lost it. Tbh I’ve no idea what happens then mainly cause I haven’t spoken to a dr about it it’s it’s been the receptionists phoning me up and telling me what to do. I did write to the main dr last week expressing my disappointment about how things had been handled but I haven’t had a reply. I think in my job if I didn’t reply to people I woudl be in trouble and he must have sensed how anxious I was. Maybe I will hear this week x
Hi @Cookie I am glad your twins are aware of what is going on.
My son is 48yrs old and still my little boy and still knows where to come when he needs something !!
Please let us know when you hear something.
Look after yourselves and do lovely things as a family, honestly your children do grow up too fast.
Ah that’s lovely he still comes to you. I stil go to my mum too she is my first port of call on everything and I’m 45! I know it’s stupid I’m not bothered about me particularly I just want to carry on working and providing for the girls till at least they are 18 I feel as if I can’t I’m letting them down, my mum says I’m being stupid as life isn’t like that and I know she is right I just feel so bloody guilty for putting everyone through this stress!
Oh @Cookie it would be easy for me to say there is no need for you to feel guilty, but those are your very natural feelings and I am sure I would feel the same…
I wonder what your family would say?
Families are usually a team (not always I know)
Logically we did not ask to have our conditions.
The main thing is you all look after yourselves.
Hi Cookie. Glad you found this site. Try not to Google, if you can’t resist, make sure the web page it takes you to, ends in ‘.co.uk’ or ‘org.uk’ not ‘.com’ or it could be USA site that wants to sell you something. www.mpnvoice.org.uk is another good site for information.
I was diagnosed with Polycythaemia vera (PV) several years ago, and am now 83 and still going strong, and living the life I want to. The fact that I was ill was spotted by a neighbour who I thank profusely, in effect she saved my life, as Polycythaemia vera (PV) undiagnosed, life expectancy is very short. With treatment, slightly less than normal, so I won’t see three score years and ten again, but I’m still here. You don’t have to tell the DVLA. Take care and stay safe, don’t ever give up.
Thank you I can’t believe how helpful you all are! It reminds me of when I went through ivf we had a forum there and people were just genuinely kind and helpful. I spoke to my proper dr today he basically told me, as you are telling me, to try and stop worrying and that even if the results come back postive islets very manageable. He maintain my bloods are very borderline and have been the same for 3 years. So I will just have to wait and see. I won’t give up my girls need me lol I just feel a bit overwhelmed and like I can’t move on ! I guess when I know the results I will be able to move forward. You are right about Google it’s not good for someone like me!! It’s definately an addiction ! Thank you again
Hi @Cookie your proper dr sounds a really sensible, practical. sensitive person perhaps go with what he says, we and the Blood Cancer UK support line are both there for you.
Look after yourselves and be kind to yourselves and keep posting
You sound like you have a good doctor there! Day by day X
Welcome. I can remember how I panicked when I first had my diagnosis in 2010 . Mine is a different blood cancer, too many white blood cells. However, what might interest you most was the chauferred car we had when hubby needed to get to Barts during lockdown. He (the chauffeur) had polycythaemia vera and was and is a professional driver. It amused me that he had too many red cells and I had too many white as if somehow we could help each other. (I don’t mean to trivialise either situations it is just my lay person’s view). My first father-in-law also had polycythaemia vera back in the 1970s/1980’s. He was quite an age to start with and did well even though knowledge about it then was so much less. He must have been diagnosed in the 70’s. Good luck. You have come to the right place. I have found help and accurate information here more than from my current GP but it helps me manage my health and interactions with GP as well as any worries I have. Tricia
Wow how strange is that! Thanks for your reply. I’m still waiting for the results it’s been 4 weeks now I don’t understand why they are taking so long. Haven’t had much time to think this week as it’s been my girls dance show all weekend so it’s been full on! Maybe I will hear this week xx
Hi @Cookie oh, what an exciting weekend you have had.
Perhaps if you don’t hear this week it might be worth chasing, I know some tests take longer than others and patience is a virtue and all that, but it might be worth it.
All we seem to do is waiting for tests, results and appointments.
Look after yourself and please let us know how you get on.